This will be of interest to caregivers. Though this study was of 400
dementia caregivers in Indiana, I think the findings apply to all
caregivers of those with neurodegenerative disorders, whether there
is dementia involved or not.

The hardest part of caring for loved ones with Alzheimer's-type
disorders is not the everyday practical challenge, but rather the
emotional impact of losing the patients' support and companionship as
the disease robs them of their faculties, according to research from
the University of Indianapolis.

"You are losing and grieving while you're providing the care, because
Charlie isn't Charlie anymore," said associate professor Jacquelyn
Frank, PhD, of the Center for Aging & Community at the university.
She says the results point toward new avenues of service that could
be provided by community-based support agencies.

Dr. Frank gathered responses from more than 400 dementia caregivers
around Indiana, most of them spouses and adult children of
Alzheimer's patients. She is continuing to analyze data from the
survey's 100-plus items, but she was struck immediately by the
responses to this open-ended question: "What would you say is the
biggest barrier you have faced as a caregiver?"

Though the respondents' language varied, a computer analysis found
that more than 80 percent of them touched on a common theme: "letting
go of the person we used to know," as one person wrote, or "watching
your loved one slip away and forget who people are."

The comments illustrate two previously noted but seldom-studied
phenomena seen in those caring for the terminally ill. "Anticipatory
grief" is the pain of losing a loved one, felt in advance of the
patient's death. "Ambiguous loss" is the discordant feeling that
comes from interacting with a patient who is physically alive but no
longer seems present socially or psychologically.

It's not surprising that such effects would be common among dementia
caregivers, but this study is among the first to document their
prevalence.

"The fundamental barrier experienced by Alzheimer's caregivers
appears to be a combination of anticipatory grief and ambiguous loss,
rather than hands-on care issues," Dr. Frank said.

The survey that is central to the study was administered at public
events and through the assistance of the Greater Indiana Chapter of
the Alzheimer's Association. Most responses to the "biggest barrier"
question fell into five categories, including:

* the patient's difficult behavior and need for hands-on care;
* shortfalls in community and financial support;
* difficulties in communicating with the patient, other relatives and
medical professionals; and
* the caregiver's loss of personal time and freedom.

The overwhelming sentiment among the respondents, however, involved
the personal grief and loss they were experiencing in the midst of
their many practical concerns. Dr. Frank was surprised that many
respondents sent personal notes and letters along with the
questionnaire, noting that they appreciated the opportunity to bring
their feelings into the open.

Dr. Frank said she hopes the study results can be used to help design
new support and intervention programs for dementia caregivers. Even
friends and family don't always understand that dementia poses unique
challenges, she says, and that adds to the sense of isolation and
hopelessness many caregivers already feel.

"These people need to know that feelings of grief and loss are
normal, and that other caregivers face the same emotional
difficulties," she said.

Fri Jul 25, 2008 1:23 am

raffcons

Joined: Sat Jan 27, 2007 8:38 pmPosts: 712Location: CA

Robin --
Thanks so much for citing the Indiana study. It hit home for me! I had been toddling along much of the last two years trying to live in the moment, not look back or ahead. Amd I hadn't had a complete crying meltdown since the weeks after Jerome's initial (mis)diagnosis of AD.

Two weeks ago, an old friend we had not seen for a few years dropped by unexpectedly. Jerome had no inkling about the identity of the person or the close relationship he had shared with this young man for years. He came out of our room for a moment, said hello, and immediately retreated.

By the time our friend left a half hour later, Jerome was into a full-blown and delusion that this stranger was here to take me away from him and we had conspiracy going. He actually went into our living room and was sniffing the seats of the chairs on which our guest and I had been sitting.

There was no talking him down or out of it, and I was glad he eagerly accepted some clonazepam and went to sleep.

This episode came SO far out of left field, it completely unraveled me. This was his first delusion in two years, and I was "the enemy." For me, it hit like the beginning of the end. I cried for three straight days. Jerome "bounced back" by that evening and kept asking me what was wrong and why was I so distraught. So we had a gentle conversation about how things are changing and that it just hurts.

The episode felt like the ship is really now casting off from the pier, so to speak, and that Jerome will be moving farther and farther away from me from this point forward (hey, it didn't help that I had just watched "The Titanic" a few nights befiore!).

Thank you for sharing the study that puts a name to what I'm suffering -- anticipatory grief and ambiguous loss -- and that lets me know that we all face that moment when the anchor is lifted and our "attachment" to our LO is loosened, and that I'm not crazy.

Thanks for sharing your story. I'm glad you can still share these things somewhat with Jerome.

I have to be *very* careful with movies now. I get plunged to the depths of despair by some.

Robin

Sat Jul 26, 2008 1:02 pm

Lauren07

Joined: Wed Oct 24, 2007 5:55 pmPosts: 39

I totally understand where this is coming from- Whilst my Mum is in early stages each and every day I consider what one day might be like without my Mum- I just can't imagine her not being there.There have been many times of anticipatory grief. Sometimes when I get a glimpse of change I feel so sad and frightened. My parents are in the stages of preparing to sell the family home that has been theirs for almost 40 years- They are selling as the garden and housework is too much for my Mum- up until less than 12 months ago she still had a complete handle on this. I had a conversation with Mum about being so sad that the house is up for sale, but mainly that LBD is robbing them of a home that they should be growing old in together.

Thanks for sharing the article.

Mon Jul 28, 2008 2:57 am

HilaryMaria

Joined: Tue Jun 19, 2007 9:54 pmPosts: 13Location: Wales, UK

Thanks for this, Robin! Caregiver grief is such an important issue, that isn't much talked about. Often it's hard for us to recognise that what we're going through is in fact grief.

When my husband Tony was in the early stages of LBD, he fluctuated so much that I might assume he could no longer do something, only to find he could still do it a few days or even weeks later! So the loss got 'put on hold' for a while. Some abilities (reading, watching TV, dressing himself) declined gradually and intermittently, so I got used to the idea that he'd lost the ability to do those things - or I thought I had. Others seemed to vanish overnight (e.g. being able to make a cup of tea!). What I wasn't aware of for a while was that I was experiencing the classic stages of grief.

First I tried denying that things had changed that much, or that they'd changed for good. I tried carrying on as normal far beyond normal, and expecting him to behave or respond as he'd always done. Then when it was obvious that he couldn't, I got angry and scared. I'm ashamed at how angry I'd get with him sometimes - and I'd feel awful afterwards. It was ages before it began to dawn on me that I was grieving. I just felt tense, angry, exhausted, anxious, panicky.

One of the hardest things is realising, after the event, that a certain occasion was the last time your loved-one actually did whatever it was, though you didn't realise that at the time it happened. So with Tony there was the last time he went to the pub... the last trip to visit family... the last time we went shopping together... the last walk we took together... the last time we sat out in our back garden in the sun... and of course, our last Christmas together, just before he went into the nursing home.

And then there are the last times that I don't remember, such as the last book he ever read, the last joke we shared, the last proper conversation we had...

The one that stands out for me now, is the time when I was just about at the end of my rope, last November, when I'd been having a terrible few days struggling to care for Tony, and he didn't seem to know who I was much of the time. That afternoon I suddenly broke down in the kitchen and started sobbing and couldn't stop. Normally I never cried in front of him, but this time I couldn't help it - and I honestly didn't think he'd notice, he was so unresponsive. But to my amazement he came over and put his arms tenderly around me, and murmured, 'There, there - don't cry - it's OK', and he held me close and I cried on his shoulder. (I'm crying now as I type this!). I had never thought he'd ever hold me that way again! But here he was, comforting me, just like the old days. I told him I loved him, over and over. But that was the last time he held me spontaneously.

Now the poor dear man is unable to speak, or smile, or change his expression. He can't move independently, he can't do anything at all for himself. He seems pretty much oblivious to his surroundings, and I don't know if he recognises us at all. He holds my hand tight, and sometimes he stares at me - but does he know it's me?

I really do feel I've lost him now, and it hurts. I cry a lot these days - but not in front of my kids. Our daughter especially gets very upset and won't discuss any painful issues. She won't even look at old photos because she thinks it's morbid, and 'he isn't dead yet'. She has to keep positive - it's her way of coping with the loss. But sometimes i do feel very alone in my mourning.

When someone dies, mourning is expected, and the bereaved are supported and understood. But when the person is still around in the body, you can't let go, and you can't grieve openly. And yet - you've lost your life partner! (or parent, or other loved-one). The relationship you had, the person you knew, has gone forever.

I've gone and made myself all weepy now, writing this! But I wanted to respond to this posting because I'm sure there are quite a few people out there who are going through something similar right now, and feeling alone. I just want to say that you're not alone, and the grief is OK and important - it's necessary. And in time, it will heal.

Love and light,
Hilary

.

_________________'The further in you go, the bigger it gets' (John Crowley)

Fri Aug 08, 2008 10:41 pm

suzee

Joined: Tue Apr 24, 2007 1:09 pmPosts: 43Location: Alberta, Canada

Thank you!!

Hilary, I can't thank you enough for your eloquent and heartfelt post......You've summed up my past 2 years with my mother in a way that I've been struggling to understand myself. Each time I come home from visiting with her, the grief returns.....sometimes disguised as anger, sometimes resentment, sometimes self-pity....but it's all really just grief. Even when we've had an excellent day together.....I try to savour it, try to burn every good moment into my memory....but then that reminds me that this may be the last time......

I'm blessed by a husband who not only understands the process, but is able to identify my grief for me, and put words to it. Without that support.....well, I don't even want to consider it.

MM -
Sorry, I meant to comment on this when you posted about your hospice meeting earlier. I'm glad you are having this meeting. If your husband qualifies, I'm sure you will find hospice a great help to you both. Please keep us posted!
Robin

Mon Jun 15, 2009 10:10 pm

jweeks

Joined: Fri Jun 05, 2009 4:15 pmPosts: 82Location: Onsted MI

It was a great article, Robin. Thank you. Sometimes they call it the "long goodbye". I feel really sad when I can't remember how he use to be...he's been ravished by the Lewy bodies so long. He was a university professor and so bright and had a dry sense of humor, everyone loved him. He's gone in almost every way but bodily. I am so glad others feel this kind of grief - it is a very difficult type, that's for sure. Sometimes I wonder if I will even cry at his funeral, I've cried so much already. I believe there is a heaven and can only hope to see him there...normal again. Jeanie

Tue Jun 16, 2009 11:00 pm

Cryst

Joined: Thu May 14, 2009 11:19 pmPosts: 28

Boy did this resonate with me! The loss of the man I have lived with since I was 17 (we've been married 29 years), my best friend, and my greatest supporter is gone...most of the time! I too try very hard to stay in today. Yesterday is painful and so is tomorrow!

God Bless You ALL!!!

_________________May God hold you in the palm of His hand and shelter you in the light of His love.

Tue Oct 27, 2009 1:28 am

bonbon101

Joined: Fri Apr 03, 2009 9:55 amPosts: 61

I just read this post today and it really hit home. Especially Suzie, this is how I have been feeling for quite some time. I feel overwhelmed most of the time. your quote:
" Each time I come home from visiting with her, the grief returns.....sometimes disguised as anger, sometimes resentment, sometimes self-pity....but it's all really just grief. Even when we've had an excellent day together..."
Is exactly how I feel. I have often felt guilty for my feelings of anger and resentment.This post made me understand that it is grief I am feeling. I too have a wonderful support team and I believe that is what keeps me going. That along with this support forum. Thank you to each and everyone of you who post here.
Diana

Tue Oct 27, 2009 10:15 am

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

I just read these posts today also. Robin the Caregiver Grief Study really was wonderful as were the links. It put so many things into proper perspective and validated some of our feelings. Thanks a million!

DEAR ABBY: I am responding to "Alone But Happy in Canada" (July 12), who feels guilty because she feels relieved following the death of her husband from a long, difficult illness.

Everyone grieves differently, but I don't think grieving a loved one's loss BEFORE his or her death is uncommon. I've known several people who watched loved ones wither away into helpless, needy and miserable individuals. I can't think of one who didn't feel the same as "Alone But Happy."

I have begun referring to it as "grieve-as-you-go guilt." A person grieves through the decline and eventual demise of a beloved mate, and when she fails to feel sadness, she substitutes guilt where she believes her grief should be. But actually she has been grieving all along, and needs to acknowledge that fact. Only then will she be able to enjoy not only her clean house, but her clear conscience as well. -- AZY IN WASHINGTON

DEAR AZY: You have keen insight. Other readers wrote wanting to offer reassurance to "Alone But Happy." Read on:

DEAR ABBY: Your answer to "Alone" was appreciated by all caregivers, I'm sure. Nobody knows, unless they have walked that particular path, how difficult and lonely it is to watch a spouse disappear over a long time, losing the history you share together, making hard decisions alone, and rebuilding an identity not tied to the past. Every morning brings a new bout of grief from the moment of wakening -- every day another day you don't want to face.

Keeping healthy and planning ahead for yourself, not as a caregiver but as a participant in the "real world," is the only way to maintain sanity sometimes. Though I love my husband dearly, I look forward to having a life again that is not centered on his disease. No one should be made to feel guilty for restarting life when he or she has given so much. -- DAY AT A TIME

DEAR ABBY: I also lost my husband of 35 years just a month ago. He endured several years of health problems and as his caregiver, I, too, felt a great sense of relief with his passing. I do not, however, feel guilty about it.

I realize that I have been grieving for several years already, as I knew this time would be coming. In many ways it is as if I am in the final stage of the process even though my husband's death has only just occurred.

Our son put it best when he said at my husband's bedside, "I lost my dad several years ago, but my father died tonight." He, too, understands that his grief began a long time ago. -- MOVING FORWARD

DEAR ABBY: Having to put another person's needs and wants before one's own can be very stressful. Not everyone is able to do that and stay pleasant and patient at all times. Fortunately, I found a local caregivers' support group. Our weekly meetings help us see that we are not alone in experiencing the trials and tribulations of family caregiving.

For those who are laboring to do their best for their sick or disabled loved ones, let me suggest they find a Senior Information and Assistance office in their area. Another resource is the National Family Caregivers Association (www.thefamilycaregiver.org; phone (800) 896-3650). These may be helpful in allowing caregivers mental and physical relief by connecting them with hourly in-home care services.

It is important that people experiencing this kind of stress get respite time to themselves, away from their care recipient, in order to be able to keep on helping them. -- ONE OF THE MANY

Dear Abby is written by Abigail Van Buren, also known as Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at www.DearAbby.com or P.O. Box 69440, Los Angeles, CA 90069.

Thu Oct 29, 2009 7:34 pm

Dianne C.

Joined: Wed Oct 08, 2008 10:30 pmPosts: 976Location: Henderson, Nv.

Robin,
Super article and responses! This should help many of the caregivers. I too felt the grieving process was happening while caring for my husband. My biggest surprise was: while I thought the major part of the grieving took place the prior couple of years...when he actually passed I didn't expect the profound amount of grief I felt...I thought it was all behind me but it wasn't. I do think the grieving that happened during the caregiving years enabled me to cope with my current grief a lot better...if that makes sense.
Thank you again for some wonderful writings. They are a big help to all

Here's a 2004 article I came across on the topic of anticipatory grief. The article points out that the grief may come with the initial diagnosis of a loved one with a debilitating condition.

A few tips are given to help caregivers cope: be more than a caregiver; create a network; assign tasks to listeners, doers, or relaxers who are willing to help; get help with housework; take care of your own health; and consider respite care.

From the initial diagnosis to a loved one's death and beyond, caregivers are faced with a barrage of conflicting feelings. Here's how to cope with them.

By Sid KirchheimerWebMD Feature

Reviewed By Brunilda Nazario

The nation's grief surfaced on Saturday, when former President Ronald Reagan finally succumbed to Alzheimer's disease after a 10-year battle. But in millions of individual American homes dealing with a similar fate, it often starts long before a death.

It may come with the initial diagnosis -- of multiple sclerosis, ALS, cancer, Parkinson's, Alzheimer's, or other chronic, debilitating conditions. Or when a once-vibrant loved one can't recall a treasured memory, move without difficulty, or even go to the bathroom. As their withering continues, over days or decades, this grief often intensifies.

"As a family caregiver, you are grieving throughout the entire process, not only with the death of your loved one," says Suzanne Mintz, president and co-founder of the National Family Caregivers Association, who cares for her MS-afflicted husband and whose father also died from Alzheimer's five years ago. "You grieve with each loss -- each time they go down a notch, with each reminder of what was and what it has become."

During the course of a chronic illness, caregivers typically experience a range of emotions: Hopelessness. Stress. Guilt. Sadness. Anger. Depression.

A Range of Feelings

"Grief is a reaction to a loss, but it can be -- and with caregivers grief often is -- a multifaceted reaction," says Kenneth Doka, PhD, MDiv, professor of gerontology at the Graduate School of the College of New Rochelle and the author of 17 books on grief, including the new Living with Grief: Alzheimer's Disease.

"We tend to associate grief with strictly negative emotions, but it's much wider than that," he tells WebMD. "We know that with the death, there's often relief that the suffering has ended. But there can also be strong feelings of fulfillment. Right now, Nancy Reagan may be saying, 'I got through this. I was by his side, even when he didn't know I was by his side.'"

These conflicting emotions can play havoc with an already stressed and vulnerable psyche, which may explain why nearly one in three caregivers meets the medical diagnosis for depression, according to a study last year in the American Journal of Geriatric Psychiatry.

"Caregivers' depression often improves following the loss, but not always," says study researcher and psychologist Holly G. Prigerson, PhD, a grief and bereavement expert at Yale University School of Medicine.

"The emphasis is often on the great relief that occurs following the death, once the caregiving and agonizing is over," she tells WebMD. "They think it should be downhill after that, but it's not as easy as that. These people typically have been caregivers for about 10 years -- that has been their identity and mission -- and it can be very difficult for them to regain their life.

"I just read a book about a woman whose husband had ALS. After he died, she became suicidal because her main reason for living was to care for him. When he died, she had a gaping hole she had to fill. Just because someone feels relief doesn't mean they also don't feel huge amounts of grief, loneliness, and abandonment."

How to Cope

So how can caregivers better work through the barrage of emotions that occur during an after a loved one's illness?

* Be more than a caregiver. "For many people, the role of caregiver is all-consuming," says Doka. "So when it ends, life can feel as though it's lost its meaning and purpose."

That's why it's important for caregivers to set up regular "me" time, says Prigerson. "You need to make sure you're not socially isolated, and your days prior to the death consist of just more than just caregiving. We found that one of the great aspects of caregiving burden that leads to depression isn't from the hours spent giving care, but that the caregiver feels deprived of their own time. You really need to take time for yourself, whether it's going for walk or enjoying a nice dinner out sometime."

* Nurture a network ... Many caregivers feel it's their responsibility to offer care and hesitate to seek help elsewhere. Bad move. "What I do on a clinical basis is have caregivers write down the names of all the people that could be in their network," says Doka. "Not just family members, but also friends, neighbors, or if they're involved in a faith community, consider members of their church, who can be a strong part of your network."

* ... And assign tasks. Understand that different people can perform different roles, he adds. "Some people are more prone to be good listeners, others are doers, while others are good for helping you with rest and relaxation. Even when caregivers have a big network of support, a common problem is that they don't use it well. I suggest on your list you assign tasks to different people: Some are Ls (listeners), Ds (doers) or Rs (relaxers)."

* Get help with housework. "You would think that emotional dependency is the biggest predictor of a caregiver's complicated grief," says Prigerson, "but studies indicate that when a caregiver has been dependent on their ailing spouse for household chores, that can have an even bigger impact." In other words, try to get help with routine chores such as laundry, cleaning, and shopping.

* Mind your own health. Since they are preoccupied with a loved one's illness, caregivers often turn a blind eye to their own health. "The risk of hospitalization of a caregiver is greatest in the months following the death," she says. So when the patient is falling, and especially afterward, be especially mindful of your eating, sleeping, and exercise habits. "This is where 'me' time becomes especially important."

* Consider respite care. The Alzheimer's Association and similar advocacy groups often offer respite care -- in essence, adult day care for afflicted patients that allow caregivers time for themselves. "One of the best things you can do is contact your local chapter or a VA hospital to see what's available in your area," says Mintz. "There is help out there."

Published June 8, 2004.

SOURCES: Suzanne Mintz, president and co-founder, the National Family Caregivers Association, Kensington, Md. Kenneth Doka, PhD, MDiv, professor of gerontology, Graduate School of the College of New Rochelle, New Rochelle, N.Y.; senior consultant, Hospice Foundation of America; past president, Association for Death Education and Counseling. Holly G. Prigerson, PhD, associate professor of psychiatry, Yale University School of Medicine, New Haven, Conn. Prigerson, H., American Journal of Geriatric Psychiatry, June 2003; vol 11; pp 309-319.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum